Joe Ellenberger, the $440K drug, his supportive twin brother and a UFC dream

Looking back, the timing could have been better. Or, to put it another way, the timing couldn’t have been worse.

It was the summer of 2009, and Joe Ellenberger was 10-0 as a professional fighter. He had just gotten engaged and was coming off a dominant first-round TKO victory that he was hoping would be impressive enough to catch the eye of the UFC, which had recently signed his twin brother, Jake, to a contract.

Any day now, he thought, the call would come for him.

“I felt like I was on top of the world,” the 27-year-old Ellenberger told MMAjunkie.com (www.mmajunkie.com).

But then, he’d also been feeling unusually tired lately. He’d felt that way all through his last training camp. He was used to bouncing back relatively quickly in between practices, but now he just didn’t feel right. When the feeling persisted even after his fight, he broke down and went to see a doctor. It’s probably mono, he thought. That made people feel tired, right?

At the doctor’s office, they ran the blood tests. Not mono, they said, but something else was weird. His red blood cell counts weren’t what they should be. His numbers were, he recalled, “all out of whack.” When they finally gave him a diagnosis that October, it sounded like something they were making up on the spot: paroxysmal nocturnal hemoglobinuria. PNH, for short.

“I had never heard of it,” Ellenberger said. “Just like everybody I’ve told about it since then.”

One of the reasons he’d never heard of it is because it’s so uncommon. Estimates put the number of diagnosed cases of PNH in the U.S. at around 8,000. Anything less than 200,000 is considered a rare disease. That meant there weren’t many doctors in Ellenberger’s home state of Nebraska who had even seen the disease before, much less treated a patient with it. The more they started telling Ellenberger about PNH – an acquired blood disease that usually shows up between the ages of 20 and 40 and quickly begins destroying the body’s red blood cells – the worse it sounded.

“They told me I could never compete in another contact sport for the rest of my life,” he said. “They told me I’d be on a bunch of crazy drugs forever. They told me if I even got in a car accident or anything, I’d be in bad shape because my blood counts were so low and my blood was so thin. And then I guess the research said that I’d probably die before I was 30 years old.”

He was 24 when he got the news. Two weeks later, UFC matchmaker Joe Silva called to offer him a fight against Mark Bocek that December.

“That was pretty depressing,” Ellenberger said.

After all, a few months earlier, it would have been a dream come true. Now it was an offer he couldn’t possibly accept. Now he had gone from wondering where his fighting career would be in 10 years to wondering whether he’d even be alive. The research said probably not. The research said his days of fighting for fun and money were definitely over, and a much tougher fight was about to begin.

Discovering an identity, just in time to lose it

You hear about the Ellenberger twins, and you almost can’t help but think about what it must have been like in a house with two future professional fighters growing up together, pummeling each other on an almost daily basis. What you might not know is that the boys have another brother, Adam, who’s just a little over a year older than them, so they were “basically triplets,” according to Joe.

“There were a lot of broken screens and doors and messed up drywall,” he said. “It was fun, though. It was a great childhood for sure.”

When the boys were in the fourth grade, Joe said, their father first tried to get them interested in wrestling.

“We were really into pro wrestling, like WWF, at the time,” he said. “When he said wrestling, we thought, yeah, let’s do that! Of course, that wasn’t it.”

Once they saw there were no top ropes to jump off of and very few steel chairs to hit each other with, they soon lost interest. A few years later, when he was about 13, a friend of Joe’s talked him into giving it another try with the middle school wrestling team. He did, and though he wasn’t very good at first – “I think I won maybe one match my first year,” he said – he quickly fell in love with the sport.

“It was just something where I had a lot of fun,” Ellenberger said. “I could see myself being defined as a wrestler. It was like that’s where I found an identity.”

He went on to become a state champion in high school and then wrestled at the University of Nebraska at Kearney, where he was a two-time Division II All-American. Even after graduating, he soon came back to Kearney as a graduate student and assistant wrestling coach, all while pursuing a career as a professional MMA fighter.

By this time, he’d been joined in that pursuit by his twin brother, Jake, who started out watching Joe wrestle before deciding it was something he had to be a part of as well.

“He’s the one who got me into wrestling and competing, watching him wrestle through college,” said Jake, a welterweight veteran of several different MMA organizations, who now owns a 7-2 record in the UFC. “We started doing grappling competitions for fun, and that’s how we got into the sport.”

But a month after Jake made his UFC debut in a split-decision loss to Carlos Condit, Joe was dealing with the life-altering news of his PNH diagnosis. Not only would he never again be able to train alongside his brother, doctors said, but he also might want to start saying his goodbyes, just in case.

It was hard enough for Jake to fathom losing his top training partner. Losing his twin brother altogether seemed unthinkable.

“When he first got diagnosed, I told him, ‘I wish it was me,'” Jake said. “I still feel that way. If I could take back everything in my life and career to make that go away for him, I would. Unfortunately I can’t.”

It’s never easy to deal with a family member’s serious illness, but it’s even tougher when you’re a twin, when you share the same DNA and many of the same life experiences. You look at the rare bad luck that has found its way into your brother’s life, and you have to wonder why it was him and not you.

“There’s not a day that goes by that you don’t ask yourself that,” Jake said. “Or why it wasn’t other people I know or grew up with, who were just bad, s—-y people. Why not them instead of someone good?”

But Joe wasn’t willing to accept what doctors were telling him about what the rest of his life would look like. No more wrestling or grappling or MMA? No more contact sports at all? How could he give up the things that had defined him since he was 13 years old? How could he just sit around and try not to die?

“A few days after they told me all that stuff, I made a decision in my own mind,” Joe said. “I just decided what they told me isn’t going to work for me. I can’t live like that.”

That January he first saw Dr. Monica Bessler, a blood-disorder specialist then in St. Louis. She told him about an innovative new drug called Soliris that had been shown to work wonders for some people with PNH.

“She said I was pretty much an ideal candidate for this drug, and if it worked well for me I could pretty much live a ‘normal’ life,” Ellenberger said.

In the pharmaceutical industry, Soliris is what’s known as an “orphan drug,” which basically means that it helps so few people because the condition it treats is so rare. Alexion Pharmaceuticals originally developed it as a drug to treat rheumatoid arthritis, but clinical trials failed. It was only later that Soliris was discovered to be something of a wonder drug for two very rare conditions. One of them was PNH.

But the thing about orphan drugs is that, since there are so few patients who need them, the cost is astronomical. Soliris clocks in at about $440,000 per patient per year, according to Forbes Magazine, which in 2010 earned it the distinction as the most expensive drug in the world. Only a few thousand people on the planet take Soliris, and Ellenberger is one of them. Every 14 days he heads to the local cancer treatment center in Omaha and gets an IV treatment. It takes about 40 minutes, and it dramatically alters his quality of life.

“The domino effect that happens in my body kind of starts at the top, and the damage really takes place once the dominoes are knocked down,” Ellenberger said. “The drug I take stops everything at the beginning, so my body doesn’t see a lot of the ill effects. That’s not to say that my body doesn’t feel any of the effects, but it’s much better than it was.”

His health insurance covers part of the cost, he said, and he also gets some assistance from the National Organization for Rare Disorders (NORD), which helps patients pay for treatments like orphan drugs based on their financial need. That’s how Ellenberger has ended up receiving a regular dosage of a drug that costs several times more than most people make each year, but which has also helped keep him alive and well. So far, Ellenberger said, the financial impact hasn’t been too grave, but even if it were, what wouldn’t you pay for a chance at life?

“They said I wouldn’t make it to 30, but even if I could buy another 10 years to spend with my daughter and my family, I mean, that’s priceless,” he said.

The comeback

Ellenberger first started on Soliris in March 2010. The improvement in his health was rapid. His blood cell counts soon stabilized. His energy started to return. That summer he headed out to California, where his brother Jake was training for a UFC bout against John Howard in August. At first he was there more for support than sparring, but slowly he found that he was able to make his way back onto the mats to help his brother prepare the way they always had before. It lifted Joe’s spirits to be in the gym again, and it also gave a boost to Jake’s training before a critical bout.

“No one knows each other better than we do,” Joe said. “Sometimes other training partners might take it easy on each other if they’re having a bad day or cutting weight or something. We never get to that point with each other.”

Jake won his fight, and Joe continued to improve. By that winter he was feeling better than ever, “And that’s kind of when I thought, well, there’s no reason why I can’t go back to competing now.”

At first, there was almost no one who thought it was a good idea. Not his doctors, not his family, not his new wife, Vanessa, whom he’d married that May. It was only a year earlier that he was concerned merely with staying alive, and now he wanted to take his extremely rare blood disease and see how it reacted to fighting in a cage? Everyone told him to forget about it, which only made him want to do it more.

“Wrestling teaches you so many great things in life, and I think when you get denied something that wrestling mindset tells you to go harder to get it,” Ellenberger said. “They told me no, and that’s when that wrestling mindset took over. They said no, and I said yes.”

Despite the improvement in Joe’s health since he started taking Soliris, his brother was skeptical. It didn’t help that, when Joe talked to his doctors about wanting to return to MMA competition, the doctors seemed unclear on exactly what MMA was.

“They were telling him, ‘Oh, you want to go back to your professional-wrestling stuff?” Jake said. “That’s when it’s like, ‘You really have no idea what we do, do you?’ … I mean, even now, [PNH] is still unpredictable. There’s just not a lot of experts on it. And if you look at the medical field and how it looks at our sport to begin with, this is dangerous. No doctor would recommend this to anyone.”

Still, nobody understood what fighting meant to Joe quite as well as his twin brother. He knew why their parents were against the idea, and even why he should be against it as well.

“My mom still worries a lot, and that’s understandable,” Jake said. “We talk a lot about competing and how long we want to be in this sport, but he loves training and competing. It’s part of who he is. I just feel like nobody can tell him what to do. Our parents aren’t going to, and I don’t think I can. At the end of the day, he has to decide what’s good for him.”

After months of petitioning his doctors and making his case to his family, Joe was finally cleared to fight again in May 2011. He won his first fight back via first-round submission and then fought again in another victorious effort that July. In October he suffered the first loss of his professional career after dropping a unanimous decision to Justin Salas, who then vaulted into the UFC on the strength of that victory.

This past March, Ellenberger (13-1) rebounded with a third-round submission win over Jess Zeugin, which set up a superfight rematch with former Victory Fighting Championship featherweight champion Joe Wilk (17-6) on Saturday in Omaha. If all goes well, this is the fight that Ellenberger hopes will boost him into the UFC alongside his brother. It’s oddly fitting then that it should come against Wilk, who was the last opponent he faced before being diagnosed with PNH in 2009.

A lot has changed since then. While Ellenberger faced the end of his career amid a life-changing diagnosis, Wilk was racking up a five-fight win streak. Now Wilk likely hopes to go the same route that Salas did and get a UFC contract off Ellenberger’s name. “But,” Ellenberger added, “he’s coming into my hometown to do it.”

When Ellenberger looks at video of Wilk’s recent fights, he said, he sees a changed fighter. Wilk looks more comfortable now. He’s less one-dimensional and more confident. He’s improved, which is plain to see by his performance and his record.

What Wilk can’t see when he looks at Ellenberger, however, is everything he’s been through since the last time they fought.

“Being in this situation where I felt like I had almost everything taken away from me, busted back down to nothing, I definitely gained perspective I couldn’t have got otherwise,” Ellenberger said. “I feel like God put me in a place where He’s kind of got a plan for me.”

Before, each fight seemed like a piece of a greater whole, another stop on the timeline that extended out into a hazy and distant future. Then Ellenberger found out for himself that the future is never more than hypothetical, never guaranteed, and not something to be taken for granted.

You don’t need to look at film to know that the fighter who has come back is not the same as the one who left. He couldn’t be. If you learn nothing else about him before the time comes to stand there across from him, waiting for the signal to fight, the one thing you know going in is that this is not the type of man who gives up. You know that whatever’s about to happen here, it isn’t going to be easy.

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